Today we celebrated Christmas the way most people do, opening presents and visiting family. Many gifts were exchanged over the course of the day, but I received the best gift first-thing this morning. It didn't come from Santa. It didn't come from a store. It had no bells, whistles or flashing lights. This morning when I went to change the twins' diapers, Jacob said "Dada". He melted my heart.
If you celebrate the holiday, Merry Christmas; if not I hope you have a wonderful New Year.
This blog tracks the progress and setbacks of a child with Hypoplastic Left Heart Syndrome. Jacob and his twin sister were born on February 8, 2011. His sister was born with a normal heart.
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Sunday, December 25, 2011
Best Christmas present ever!
Saturday, December 24, 2011
...all I want for Christmas
Dear Santa,
I only have a few things on my list this year. I want Jacob to have a comfortable year in 2012, he has had enough pain in his short life. I want to have no more scares this coming year, 2011 has aged me emotionally. I want Jacob, Corrine and John Paul to have healthy sibling rivalries, its only natural. What I want most of all is the continuing strength I have found in great friends and family for they are the cornerstone of my sanity. I want them to know how much they mean to me and my family in both subtle and profound ways. This is all I want for Christmas this year.
Saturday, December 17, 2011
Neurological evaluation
Today I brought Jacob in for an evaluation on his neurological condition. The doctor says that his brain is faring well considering the damage it received. His skull is developing normally and his brain shows no sign that it has atrophied. Today was the first time I got to see the MRI images. It was kind of scary. The healthy brain showed on the screen as light grey. The damaged portions were black. There was an awful lot of black. The stroke, while massive, spared the front and rear of the right hemisphere. His doctor was very positive and did not dwell on what would be lost but what was saved. His gross motor skills, speech, language skills and memory appear to be intact. His weaknesses will be in spatial relations, fine motor skills on his left side, problem solving such as math and staying focused. She said that it was more likely than not that he will attend a normal school albeit with some special services. He shows no signs of mental retardation. He is showing signs that his left brain is taking over some of the lost functions. He is moving his left arm and leg more and more each day. He really is a resilient boy.